XMRV stigma starting already

hi all. i don't know why i expected any different, but i was hoping that the stigma with XMRV wouldn't be as bad as HIV. it is.

i know someone who was one of the first ampligen patients. she is in contact with many, many patients, including several who were in incline village at the outset.

she says that they have all been so open about everything with eachother until now....but since XMRV, no one is talking. no one is telling eachother their test results, or much of anything!

this is going to be bad. i had to deal with so many years of isolation because of this illness, i wonder who will want to even see me when they all find out about XMRV. and if it is transmissable by saliva, i wonder if i will even be able to get a job at my old workplace! they all know i left because of CFS.

Patient in training

Lady bug, my best friend is a nurse and I haven't seen her since April last year- and throught out the fall she was barely phoning. We talked to each other after Christmas, and it ends up that it might be "catchy" so she is refusing to come and see me. And I know for sure that there is nothing I can do about it, and no point to try to convince her to anything. I decided to let it go.

Honestly, I am still in the clan that would rather have XAND than Reeves's disease.

Knackered

Guest

hi all. i don't know why i expected any different, but i was hoping that the stigma with XMRV wouldn't be as bad as HIV. it is.

i know someone who was one of the first ampligen patients. she is in contact with many, many patients, including several who were in incline village at the outset.

she says that they have all been so open about everything with eachother until now....but since XMRV, no one is talking. no one is telling eachother their test results, or much of anything!

this is going to be bad. i had to deal with so many years of isolation because of this illness, i wonder who will want to even see me when they all find out about XMRV. and if it is transmissable by saliva, i wonder if i will even be able to get a job at my old workplace! they all know i left because of CFS.

If it turns out XMRV is the cause of our illness and medication becomes available that enables you to live a normal life, you won't have any reason to tell people you have XMRV.

I'm sure you'll have met people in the past who are HIV+ and you'd never have known, I wouldn't worry about it. I've told my friends and famiily that the cause of CFS could be s a virus similar to HIV and no one cares, if anyone treats you any differently they aren't worth having as friends anyway.

PWME - ME by Ramsay

The Incline Village people may have other reasons for not talking about their XMRV test results. I've been on a rollercoaster of emotions since XMRV was discovered in PWCFS. Anger over medical mistreatment, grief over the losses in my life due to the disease, uncertainty over the future. I'm also questioning what I want to tell people while and after my test results arrive. The Incline Village people may be feeling overloaded as well.

PWME - ME by Ramsay

We were usually blamed for being ill. Every step of the way I was told that I was somehow "wrong". We were blamed, judged and found wrong by the media, in legal courts, when requesting govt benefits to survive, by doctors, by psychiatrists, by social workers, by the police, by employers and co-workers, by politicians and sometimes by family and friends. All the measures in society created to protest the weak, sick and powerless failed us.

The same people who did this are still there. The world has not changed but we all hope that it will. We can use the XMRV news to help regain our own self-belief and power (if we have been beaten down by the abuise).

It's too soon to know what the backlash will be. Certainly too soon to know what the psychiatric lobby is planning, to counter the XMRV news. Probably too soon to consider seeing a shrink (even a team) unless you know of a good safe, one. People who were supportive beforehand may change - some will become more supportive and others less.

Why can't you forgive yourself? I didn't forgive myself for a while too, I thought my choice to have a vaccination when I had been exempt meant that I had brought it on myself but deep down I know that was a load of rubbish. I blamed myself because then it made sense, I knew why it was happening even if I turned it on myself stupidly. I needed it to make sense, to have a reason, but as the old saying goes... stuff happens (well, that's kinda how the saying goes). Good stuff, bad stuff, boring stuff, fascinating stuff, sad stuff, happy stuff and random stuff. There's no fault, no rhyme or reason as to why it was me or you and not the guy in the waiting room next to me. You know, even if I had brought this on myself I would have forgiven myself by now because I truely didn't know. I do my best to be a good person, I make mistakes like any other person but that's what makes me no different to anyone else. ME is no ones fault, just like MS, diabetes or malaria - you just happen to be the person on the receiving end of the ... stuff.

I doubt I could get you to reassess eighteen years of holding yourself accountable but I didn't really see myself as a good person dispite ME until I was eighteen years old. I went through so much self hatred and suffering that I don't want anyone else to go through that when it truely is needless. It achieves nothing and at the end of the day, having this disease does not make us bad people. There are many healthy people who I could describe as bad people, even evil people, because of their voluntary actions, not because of involuntary illness. Do not listen to those who say 'if you did such-and-such you'll be ok' because you and I know it doesn't work that way. I did the cold showers malarky, it dunna work my friend!

As for the stigma, hell, it'll die down we just need to keep strong and show that they are in the wrong to be so afraid. The HIV/AIDS lobby have laid the ground work, we just need to assert our rights when we need to and keep quiet. It's no ones business but our own as long as we're not going round spraying blood on folk. People fear the unknown, as the information flows we'll be able to give people an informed view. My biggest worry is having a medic alert bracelet on show to all and sundry, I can't wear long sleeves indefinately but I don't want to endanger someone if I was unconscious from a car accident or something. We'll see how things truely unfold over the year but we'll keep talking on this board and work out ways to ease the transition into retrovirus carriers (if it happens).

Those who are still anti-XMRV after all this can go stick their heads in a pie. Maybe it'll mean not being able to step into our old lives, then that may open new opportunities for us all. I don't know how things will pan out, how people will react, I worry that my SiL will go off the handle but I can handle her. We'll handle this, we're bright folk and we will get our voice back.

I for one will be letting y'all know how my test comes back but as I'm sat in the dark ages of Britain we'll all have to wait.

Senior Member

Getting sick is not a punishment. Not from "god" or any other place. There may be karmic reasons for it, such as what being sick can teach us about compassion for others, and then for ourselves. (Karma is not punishment, but a balancing of energies.)

In Buddism, there is the concept of "making merit with Buddha". One of the reasons the poor and the sick are placed in our/their paths can be to give us/them the opportunity to make the choice of making merit with Buddha or ignoring the suffering and needs of others. When I am tempted, by other people's judgements, to condemn myself, I try to remember that I may be here to provide others with an opportunity to make merit with Buddha. Of course, it is healthier not to expect anything from them.

We sufferers of this DD know a lot of people who have chosen to ignore us or to contribute to our suffering. That is their choice and does not reflect on our value as human beings. It reflects a lot on them and their choices. Abuse of resources, power and position, for starters.

In Taoism there is the concept of monads, which are paired experiences, such as teacher and student; disease sufferers and healers, etc. According to my beliefs, we all have to do both sides of the monad sooner or later, in this life or another. Often we only experience one side of the monad in a particular life. And bottom line, we are all, even the "evildoers", doing the best we know how, with our, possibly, self-selected "blinders".

One of my Christian friends wrote a whole book on the concept that the caregivers get as much out of the equation as the receivers of care do.

Ladybug, don't give them permission. Ditch the guilt. Forgive yourself. If you have to start somewhere else, forgive those who have hurt you, first. We don't have to give up countering the ignorance wherever we meet it, but it is healthier for us not to waste energy on trying to change those who are not willing to learn. Like water encountering a boulder in the stream, we may need to go around them.

By the power entrusted to me by the goddess Quan Yin (goddess of compassion, and my avatar), I absolve you of guilt for everything, forever and ever. ;-) You really have done the best you could and no one, not even you, can expect more than that. Go say five "I am loveable just the way I am"s. Or ten, if you feel like it. Consider yourself hugged ((((U))))

And there are already dating sites for those who have disabilities, if it should come to that.

(I too, hope XMRV is the "cause" of ME/CFS, and I'd rather have XMRV than Reeves Disease. I can deal with whatever the ramifications would be if that turns out to be my reality. It's the unreality of not knowing that bothers me so very much. Not knowing steals my confidence in my own perceptions, and makes me vulnerable to other people's misperceptions. As for having an "untreatable" disease, I don't accept that as true either. If not antivirals, antibiotics, immune boosters, etc., then there is the whole new field of stem cell rejuvenation. They are even able to regrow TEETH from stem cells and implant them in your jawbone. Animal studies only, so far, but it's working for pigs. Even as we agonize over this DD, there are real scientists looking into the possibilty of treatment of this DD with stem cell therapy.)

Keep hope alive. Focus on the good as often as you do the bad. (Advice to myself, mainly.)

All shall be well . . .

By the power entrusted to me by the goddess Quan Yin (goddess of compassion, and my avatar), I absolve you of guilt for everything, forever and ever. ;-) You really have done the best you could and no one, not even you, can expect more than that. Go say five "I am loveable just the way I am"s. Or ten, if you feel like it. Consider yourself hugged ((((U))))

Senior Member

Re: Medic alert bracelets, they make ankle bracelets if you don't want it on your wrist. Also they make necklace versions and some others that look like nice rings.

Yeah, gosh, my own family would probably think it was MY fault that I caught XMRV. They'd say it was because I had unprotected sex or something, which is untrue, but they like to believe these untrue things... why? Well I think it's because otherwise they feel like it's THEIR fault. Or even if it was an "accident", it's easier to blame the ill person.

Senior Member

Beautiful post, oerganix. T'is more than merely interesting that the spiritual traditions have harmonics with each other on suffering and giving succor to the suffering. I think it's a sign...

Now, may I share my thoughts on "Reeves' Disease?"

It's too bad that name is catching on with PWCs. I'm not sure how calling the debilitating illness of anyone that doesn't test positive for XMRV "Reeves Disease" can be helpful. So far as we know, it is still possible that there are many people who will test negative for XMRV but who will still have all the criteria for the Canadian Case definition of ME/CFS - and who will still be dealing with a debilitating illness (that is not psychiatric). We don't know what the science is going to show with XMRV.

I do not want to put a stigma on anyone who might have acquired/developed their ME/CFS from a source other than XMRV. How about no stigmas on anyone - at least from our own community?

George

Guest

Depends on the person doing the stigmatizing I think. Your doctor may end up treating you better but your "friends" may end up treating you worse. While now, it just seems like everybody thinks we are crazy. (grins)

Senior Member

Lucie, "Reeves Disease" is really a term of derision for Reeves and the CDCs pitiful efforts to (not) actually research the organic causes of CFS. I don't think those who use them term want to exclude anyone with organic symptoms from diagnosis of CFS.

It's my understanding that "Reeves Disease" applies to the cohort that Reeves has included in HIS definition of CFS. This greatly enlarged definition, and thus cohort, includes "illness behavior", depression without the Canadian definition symptoms that also go with CFS and whole lot of other "symptoms" that guarantee there won't be an important percentage of CFS sufferers who have organic symptoms, thus insuring that Reeve's pet theories promoting the idea that it's all in our heads will be advanced.

The term was coined by a woman (sorry don't remember her name) who was poking fun at Reeve's attempt to dilute the CFS cohort by adding in all kinds of symptoms that he can then declare are psychosomatic manifestations of "wrong thinking". She was giving public comment at the CFSAC meeting. Sorry I couldn't find the exact segment to point you to the youtube.com video. Maybe someone else knows how to find it.

I agree - no stigmas on anyone. Except maybe psychiatrists who overstep their area of expertise and try to cram every disease into the psychiatric box. ;-)

Ladybug, you are loveable just the way you are. Repeat every 30 seconds, or until you get relief. (((U)))

Thank you for your response oerganix. I understand where the term "Reeves Disease" came from and that it is a term of derision. I was responding to Kati's post.

Quote from her post: Honestly, I am still in the clan that would rather have XAND than Reeves's disease.

I don't think Kati meant to stigmatize. (Geez, Kati, may not even have meant "either/or.")

I've seen other posts where it's either XMRV or Reeve's. My point was that it is not a matter of having either XMRV or "Reeve's disease." It is possible, maybe even likely, that there are other viruses or causative factors for ME/CFS.

Also on psychiatrists (hmm, I sound argumentatitve but don't mean to be), I have anxiety issues and see a very good psychiatrist. He has been one of my strongest supporters. He thinks the idea of excluding someone from the ME/CFS diagnosis if they've had certain types of depression is a bunch of hooey.

In his words, "A person can have two illnesses. A schizophrenic could get pneumonia. There is no reason someone with depression couldn't get ME/CFS." Yay, for the good psychiatrists! Before I was diagnosed, but very sick, he told me, "Your symptoms (other than the anxiety) are not psychiatric. There is something very wrong with your immune system. Your GP hasn't noticed this?"

Maybe I'm veering off from the topic of stigmatizing those with XMRV, but stigmatizing or thinking of classes of people in generalities is one of those things where I feel inclined to defend.

Ok, Dona Quixote Lucie will put down her armor and go back to bed. Not much energy left to save the world today. Much less brain functioning.

Senior Member

I think I'd rather be negative for XMRV. Of course now I feel like I'm gonna end up positive, because this is the one I don't want. I am scared of the stigma.

Then again, it should be pretty common, probably way over a million people with it in this country alone? Still a small percentage.

With EBV, HHV6, CMV, etc I don't feel like most people would be scared to have contact with me. I feel their immune systems would be fine and just take care of it, so exposure because of me is just like getting a vaccination. Hopefully. With XMRV maybe it's different? Apparently some carriers are healthy still, so I hope it's not different, but I suspect it is. And anyway, retrovirus sounds very scary.